We Need Champions,Passionate Champions

There is an ethical imperative to improve the evidence base for the clinical care that is delivered by hospice/palliative care services. No care is so good that it cannot be improved. This applies whether it is supporting patients or their caregivers and families.

Not every clinician can or should be doing research in hospice/palliative care. Research is highly specialized, requires specific training and, at times, is expensive to do. There are opportunities to explore the attitude in each of our teams toward research and quality improvement. ¹ As individual practitioners and as teams, all of us can contribute to research and quality improvement in three key areas:

• Ensuring as research is being done in our clinical program that we are facilitators of the process, (not simply neutral and not putting barriers in place);

• Building into daily practice clinically relevant quality improvement cycles that are used to systematically improve the care offered and the way the system delivers that care;^2,3 and

• Championing the findings of high-quality research and audit for uptake into clinical practice.

As clinicians in hospice/palliative care, we can have confidence in the attention to detail and ethical underpinnings that go into designing and executing research in this field, especially as major multisite initiatives are generated.^4,5 Institutional review boards and research ethics committees agonize over every aspect of these studies (anecdotally at a level that is far more rigorous than many of their other deliberations) before giving approval to proceed. Their threshold for deeming that the burden to study participants is acceptable appears (understandably) higher than in other clinical disciplines. In our clinical programs this should give us confidence to be active facilitators of research and to champion involvement of the service as a whole.

As the discipline continues to evolve, the processes are developing to deliver high-quality, sensitively designed research. Researchers are learning from each other and, through this, improving the designs and methods employed. The care taken in designing and executing studies should not be underestimated. Codifying each of these steps and exploring the thinking behind them is outlined in the paper in this issue of Journal of Palliative Medicine by S. Hickman and colleagues. ⁶ The paper demonstrates that researchers take very seriously their commitment to ethical research especially in the setting of end-of-life care.

As researchers in the field, we must be able to demonstrate to the community the processes to balance the ability of people at the end of life to participate in research with the ethical processes to protect potential participants. These factors include:

processes in recruitment and consent (initial consent to contact; initial contact; consent processes; decisional capacity); and

protocol-related strategies (how to approach sensitive topics; the language used; working with clinicians and participants, stressing the flexibility needed to engage people in the processes of research to optimize contact to consent). ⁶

Investigators have an ethical imperative to maximize the use of resources. In hospice/palliative care there are ways we can use limited research resources more effectively. The first is to ensure that in designing studies, every single datapoint can contribute to some aspect of the analysis of primary or secondary outcomes. Simply relying on a primary endpoint is not going to build the rich data in secondary endpoints required by clinicians and policy makers to interpret those data fully and to plan further studies. It is important to ensure that substudies that can be embedded at marginal cost a priori are included in the initial design. These substudies also provide immediate benefits to research students that, through this, have a ready source of data for analysis and interpretation. The personal cost to patients and their families as participants in research, the challenges of recruitment and retention, and the need to answer as many questions as possible mean that researchers must look at how they can most effectively use each person's participation without adding to participant burden or study cost.

Ultimately, our professional responsibility is to contribute to the generation and uptake of new knowledge into practice and policy. This will happen more effectively if each of us commits to championing the local conduct of ethically sound, carefully designed clinical studies and high-quality initiatives. Such knowledge can improve directly the care that we offer and the systems through which that care is delivered.